This Is MS Multiple Sclerosis Community: Knowledge & Support

Gracious Jim! I hope Wiggy as well as Macintosh uses that to show her doc. I must say I liked this especially: I took them for in excess of a year before moving onto intermittent treatment. The only things that happened to me were that I avoided both looming devastating disability and death. I didn't get a cold either, although I did get a bit of gastro-intestinal disturbance for the first few weeks.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Jim,
Thanks for the note - I will take that to her next meeting. I had to laugh at side effects of ms you listed and so true - 10 years of this and I can no longer walk 2 steps unassisted, that is a terrible side effect. As I am only 40.

I am printing out everything so I am ready for next visit as my only concern is that the bloodwork she did does not show a current infection and she says no.

I will find someone else that will write the scripts if she will not.

I asked my husband to come with me to next meeting but he would rather not as he feels like she should make up her mind without his influence.

I have mail ordered the supplements.

Wiggy, I showed as not diagnostic for CPn, entirely negative for Lyme, but as soon as I started on doxycycline I showed that I had an infection somewhere. My MS stopped progressing from that day. All in the head, you see!

When David sees new patients he actually likes to have the partner there as well so it might be an idea for your husband to go with you, even though it is a slightly reverse situation. You are lucky that he is so supportive. I can't understand anyone refusing antibiotics for the reasons you have been given. I had only taken abx twice before, penicillin for scarlet fever when I was seven and something else for an infected mosquito bite when in my twenties. I was never someone to rush off to the doctors at the first sign of a sniffle or sore throat, but I decided straight away that I had to do this. It worked: I am not only alive and not in a wheelchair but I have got the use of my arm back and can do my art professionally again. I can't walk for miles and miles yet, but there is no reason why I can't again if I work at it.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Sarah,

When I went I told her nurse assistant about protocol and she was excited.

I do not expect she will find infection, but am hoping for one - the person who drew my blood said she would be praying for me and I thought if you really want to help throw some bacteria in that blood tube

My thought are it may not work for me but I will never know unless I try this. This is not in my family genes - MS.

Your story is a great one!

I would like my husband there as I am not as convincing as I used to be, I read material but was not really strong in throwing out material when she brought up her concerns. My husband is great at arguing and can read material once and use it when needed. He is very supportive, lucky to have met him.

The good parts of the meeting were she not only tested me for many infections - she wants to know where my yeast level is at if i start antibotics it will change and she wants a starting point.

Going to help daughter make Valentines Cookies - Happy Valentine's Day!

Nor mine either, as far as I know, but if you don't try you will never know.

Do take your husband with you. I fought shy of doing that myself at first, but they are worth their weight in gold. I know that now. Only one more hour to go here for Valentine's Day, so I had better go and make the most of it!

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Sorry to interrupt but what is NAC? I feel stupid but those acronyms can mean many things. Carole

NAC is N-Acetyl cysteine. It's an integral part of the Wheldon protocol, in that it forces chlamydia pneumoniae bacteria out of hiding and they emerge prematurely and starve, waiting to be killed off by the flagyl part of the protocol. It's available as a supplement and requires no prescription. Hope this helps you. I know it can all be pretty imtimidating at first.

_________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thanks MacIntosh, I memorised that name in biochemistry class but we never called it NAC... thanks for explaining. Carole

Just an update, I started probiotics on Saturday. I will see my doctor about antibiotics in 2 weeks.

I have been diagnosed with MS for 10 years and I am over a 6 on EDSS scale. I am from Michigan.
1994- began having problems - right foot drop
1996 - finally diagnosed
1996- Swank Low Fat Diet
1998- To Germany to see Dr. Hans Nieper, Calcium EAP program for MS, 1998-2006
2003-Copaxone for 1 year, 3 attacks and still have bruises from injections
2004-current LDN, worked up to 4.5 mgs

No changes on MRI for past 2 years, stable
Prior to LDN having MS attacks every year.

Also tried histimine and estriol with no results.

Physical Therapy Exercise- 3 x a week

Current Situation:
Walker - all the time - in home
Scooter - Long Distance - outside of home

Diffculty standing for long periods of time 45 min. longest without sitting down.
Difficulty putting socks and shoes on -
Difficulty tying, with buttons, cutting tough foods (meats), typing

That is all for now and I will let you know how Dr. Appt goes in 2 weeks

Hello Wiggy, the very best of luck when you see your doctor in fortnight. You are about the same level as I was on the disability scale when I started, although it took me longer to get there. In the end, the progression happened very quickly and the disease was very active when I started abx, with the result that I was also very active in the right direction and so pulled back on the scale much more quickly than someone who has had that level of disability for longer. I say this because I don't want you to be disappointed with the rate of improvement you might find. Initially, stopping progression is the main thing.

If you have started probiotics as well as the supplements before starting the antibiotics, I would be very surprised if your yeast level changes that much. It has never been a problem with me, unlike many people. I think the Swank diet and LDN also stand you in good stead, not that a lot of neurologists would think so.

I get on tenterhooks when I know someone is about to start so do keep us updated.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Sarah,

I am in it for the long haul as long as I can tolerate the program, I never wanted to go on Interferons due to the 30 % effective numbers and weekly flu like symptoms. If I am sick just with a the flagyl pulses this will not be a problem as I can plan my life around it.

I do not expect quick improvements as I do not want to set myself up for disappointment and I have had this for a long time. A lifting of the brain fog would be a big improvement.

I will keep you posted as the others have, as I think it is very helpful.

Hi Wiggy

My EDSS rating was 6.7 in June, 2005 when my neuro. said "I expected you to be much worse" and 3 months ago was a 2.5 I have been on Rifampin and Doxycycline 2x a day since Sept., 2004 and Azithromycin MWF since Aug., 2005 and have done 20 "pulses" of Flagyl. I was "fired" by my neurologist for stopping Avonex early Dac 2005 and have contined improving. He did not want to know why anything. We know there is someone out there for you and as the old song goes- "Time's awastin' " Best luck! Please keep us posted.

Rica

_________________
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Flagyl tastes better... No, really, it's true! I have found a way to take flagyl and not taste it and it will probably make you happier every time you do! I take the flagyl tablet out, coat it with jam or jelly and toss it in my mouth, quickly followed by a water chaser. You'll NEVER taste a thing, except maybe a fleeting taste of the jam. DO NOT LICK YOUR FINGERS before washing them (you can tell, I did this and the taste was flagyl-awful). Remember to coat the sides/edges of the tablet, as well. Mary Poppins has arrived!

P.S. Do not try this with peanut butter (I did). It sticks, you taste it. Oh, boy, do you taste it. Flagyl and peanut butter are one of the worst things I've ever tasted. And for hours and hours, I tasted.

_________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hah, I'll tell David this! He doesn't have a sweet tooth, so he says, but we shall see. Tinidazole tastes marginally less yucky, but not totally so I might try it myself.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

I think I do have NAC Flu only after 1 day of NAC or I caught a flu.
Could it happen that fast? I have been taking it since Sat.
Tired, not hungry, achey is how I am feeling, it comes and goes and I am still getting through day.
I never had this problem with IV glutathione, so I did not think it would be an issue.

Thanks for flagyl tip MacKintosh - I will try it when I get there.

Hi Rica, thanks for the encouaging words.